Monday, 30 January 2012

It's Sunday night and Grace is going through the anxious weekly process of preparing to go back to school.

Earlier, she bounced back to me full of vigour and pretty excitement following a weekend of parties and outings with her father. Now she is dragging her pyjama top miserably over her head, her movements sluggish and her tone of voice flat.

Silently I watch my daughter pull down the protective barriers and steel herself for whatever the next week might bring. I tell her she may read for half an hour in bed, hoping it gives her some respite from her worries and calms her pangs. But when I go up later to put her light out and say goodnight, her face is pale and stiff.

"Mummy," she begins, and in the inflection of the word I know already the upset that is to follow.

Grace tells me she is worried about having someone to play with on Monday because X, her most recent chum (they're all temporary, rotating in and out of friendship in a way that still baffles her), will be playing with someone else. Y, who used to be her friend, now has alliances elsewhere too and Z, a sweet little soul on whom Grace could always depend for a smile and a game of witches, is these days fast friends with A, after some complicated reworking of the class relationship rota.

As she speaks Grace moves from upset and apprehension to frustration to anger. By the time she has finished she is glaring at me, eyes shining and cheeks hot. It heartens me to see her animated again, but it also alarms me because I know what's coming next.

"They're all just STUPID, with their STUPID games!" she shouts.

Then she adds quietly: "I wish they'd play with me" and starts to cry. "I never have a best friend."

She gestures with the book she's been reading and lets it drop. It lands face down on the floor where I can see the title. It's "Best Friends" by Jacqueline Wilson.

God, I hate that book. I am seized by the impulse to jump up and down on it and shout aloud at its stupidity and wrong-ness.

Where did this myth of best friends come from? When did it become the latest nonsense to feed to our daughters, another pink-laced impossible ideal they must struggle to achieve even before they reach puberty? I hate it. I hate everything it insists on: the cloying sentimentality of the dream of having someone who knows you inside out and will stand by you through thick and thin. I mean really, did anyone have a friend like that? I didn't, and I don't know anyone else who did. My sisters and most of my female friends had to navigate complicated daily bitchiness and often physical push and shove. The idea that we all find soulmates by the age of 10 is arrant nonsense. Some of us, with luck, met a good chum at secondary school. Maybe others found one by university. Some, not at all, not ever. So how did this huge lie come to be accepted as the norm? I look at the shitty trinkets peddled by Claire's Accessories (please, o God of the recession, take this one soon) and I think Best Friends Forever? Come off it. Grace, however, will always finger these nasty bits of tat wistfully: the necklaces that come in a pair with half a heart pendant on each; the fluffy badges and glitter-pink bracelets that declare someone values you above all else and has got your back in return. Like everything else, girls now have to achieve a superlative, ad-man's version of an original idea. Not just friendship, but BFF-ship: the perfectly-toned, white-toothed, glossy-haired version for today's pre-teens. All bollocks, dreamt up by some cynical men in suits, probably in LA or NY or somewhere else with lots of initials and acronyms: OMG, what a great idea!

For Grace, often still struggling with the basic tenets of social interaction, best-friend-dom is the Holy Grail.

I take the book from my daughter and I think for a moment and then I say, carefully: "Not everyone has a best friend at primary school, you know. It may seem like it, but they don't. Some people meet their best friend at secondary school. I met my really good friends at university. People change friends and need different friends at different times. I'm still making friends."

Grace looks at me sadly. I ask her to think about her class and think about who has a best friend. She reflects, then names one or two. The pairings she tells me of are new and I know with certainty that, like in my days at school, they will have been the result of internecine struggle. Modern warfare and diplomacy has nothing on the savagery and alliances of little girls. (Not that little boys have it sorted in the BFF battle either as far as I can tell: but there doesn't seem so much pressure on them in this regard and anyway, their shifting coalitions of football teams and card-swapping squads seem to occur with far less heartache.)

I see that she is a little reassured and I go to hug her. She whispers into my hair: "But Mummy, I so want to have a best friend."

I look at her and I think what a wonderful best friend she would be: affectionate, funny, endlessly inventive, ferociously loyal. And totally without guile: aspies don't do maliciousness or mind games - they are the most straightforward people you can meet.

I whisper back to her: "I know. And I'm sure you will. I'm sure she's out there waiting for you. You just haven't met her yet."

Monday, 23 January 2012

Under the soft, heavy pressure of the duvet I wiggled my toes experimentally and cudgelled my brain into thought. Around me the dim shapes of bedroom furniture came into focus as the light outside the windows diluted darkness into grey grain.

It was Saturday. A 14-mile run beckoned. I swallowed hard, and realised what else had been troubling me: a seam of pain down the back of my throat and between my ears, that tell-tale singe that spells the start of a cold. I sat up and felt my chest tighten, my head thump uncomfortably.

There was no question of not running. This was the start of the next leg up; the move into marathon running, the advance from the known of 13 miles into the unknown of 14 and the first real test of my stamina for several months.

I pulled on my clothes and ate breakfast with my ears ringing, the porridge sticking in claggy lumps to my tender stomach lining.

From the moment I set foot outside I knew it was going to be all, all wrong.

I set off along the road on which I live, avoiding the wobbly paving slabs without conscious thought now, then turned right past the bus stop, down the hill under the railway bridge and then up and up and over the crest, a two-minute climb that usually defrosts my joints and sets my blood singing. This time it was as though I had swallowed a press of angry wasps that teemed and chafed in my chest, buzzing in my throat with every huff. Arriving at the top of the hill in agony, I paced on for a couple of moments with no heed to my surroundings as my thoughts fought each other. The urge to give up was immense. The fear of the psychological impact this could have on me was equally huge. I have never given up on a run before. I have never stopped running during a run before: just to slow to a walk would be admitting defeat and creating a dangerous template for the following attempt and the one after that and the one after that and so on..

So I continued. I had planned an eight-mile route with a three-mile loop at each end, drawn in my head like a weightlifter's bar and discs. The weight of it was crushing.

I had gone two miles and was round the path into the woods when a small white terrier dashed out of a thicket 50 yards ahead and made for me. I slowed my already treacly pace and feinted left to dodge the dog. It bobbed briefly the wrong way then bounced back, barking shrilly, and came straight for me, leaping up onto my thighs and aiming a nip at my face. I reeled back, stumbled, then tried to run faster, only to entice it further. The dog chased me for the next ten or twenty paces while I, like a drunk, aimed ineffective blows and curses at it. Its owner stood watching, carefully blank-faced, a way off. I gritted my teeth, put my head down, and produced a spurt of speed that was enough to break the game and leave the mutt behind. Turning to check it had given up, I ran backwards briefly, aiming a last volley of abuse at the owner, then headed into the next stretch of path.

I had run three miles and my legs felt like water. I was dressed for the cold and soaked in sweat: over the next three miles I removed my hat, then my gloves and my coat, which I tied around my waist. I must have looked like a stumbling mad woman, scarlet and wild-eyed among sedate Saturday joggers and couples out for an amble in the unseasonal sunshine. The pain in my chest was like a saw.

At seven miles I emerged from a park and began the slow climb up the next hill, a very public torture along a path at the side of a busy road. I had timed my arrival at this section with the return of the ten o'clock riding lesson to the stables on the other side of the road and found myself at the end of a line of horses and riders, a swaying single-file column stretching for ten or twelve steeds which proceeded with regal slowness in front of me. I did not have the strength or space to speed up and overtake them in the narrow gap between path and traffic, so for five minutes I staggered behind, skipping steaming piles of horse shit and acknowledging toots from drivers like the clown at the end of a carnival parade.

Finally they were gone, I was at the top of the hill and a mile of downhill rural joy via scenic fields awaited. I had reached the eight-mile point, the magic gateway at which I usually get my second wind and enjoy several miles of easy loose-limbed running. This time nothing happened. I crawled on.

I spent the following four miles drifting in and out of consciousness and marvelling through the pain at my marvellous legs and their marvellous ability to somehow keep going, albeit at a granny-stagger. At one point I was tempted to take a photograph of my feet in their filthy, mud-caked trainers. Such dear, comfortable trainers. I was like a first-year student taking hallucinogens for the first time and goggling at the sudden quotidian wonders that revealed themselves.

At twelve miles it started to rain.

At thirteen-point-three miles a hiccup of self-pity escaped me and I cried, briefly.

I flailed through the next point-seven miles with my wrist in front of my face, willing the blinking digital numbers on my watch to reach their final sum more quickly.

And then it was done. My legs were in agony, my chest was on fire, my scalp and hair were sodden. With shaking hands I turned the key in my front door, staggered into the kitchen and started to cry. It was over, but I knew I had to do it again and again, whether or not it got easier, which right now seemed entirely impossible.

Gracie my darling, I have often wondered what your days are like: how you summon such reserves of courage and grit to keep going when everything seems difficult and the barriers constant, one after another.

On Saturday I got a closer glimpse and daughter, I salute you. You are again and forever my inspiration.

Tuesday, 17 January 2012

Last weekend I faced a 13-mile challenge. I have completed this distance only once before, when I participated in the Royal Parks half marathon last October, and a significant part of that accomplishment was directly owing to the atmosphere of the occasion: roads lined with smilingly encouraging spectators and my own dear family popping up at regular intervals to wave and cheer wildly.

On Saturday, I was on my own. I got up to freezing cold and darkness, leaving behind a warm bed and an even cosier toddler. In her white, poppered-up sleepsuit, baby Betty waved me off frowsily, hugging her bottle of milk to her. It took every ounce of my resolve not to crawl back under the duvet to her baby breath and soft burrowing body.

So as I stepped out onto the frost-rimed pavements, beneath skies that were purple with the merest suggestion of dawn, I was in dire need of aural sustenance. I have done many runs to nothing but the sound of my own pulse in my ears but increasingly as the distances stretch longer in front of me I find myself resorting to assistance from my ipod.

Early on in my running career, years ago when Grace was very, very little and the game was for far smaller chips, I crafted playlists to dream to: thoughtful, earnest warblings about spirituality, love and hope that inspired me.

They didn't last long, largely because when I listened to them on the treadmill my runs didn't either.

Next, I resorted to brash pop: Blondie was a favourite for a while and around this point I believe I managed a whole 3 miles. Then I segued into pop pop and hip-hop for a while, listening surreptitiously to Justin Timberlake (my husband did not approve) and NERD.

When my marriage was falling apart I went through a punky, shouty phase (I'm still referring to the music here) and slogged around the grid of streets near my home in Washington DC to the likes of Killing Joke and The Teardrop Explodes. Then when I fell in love again a few years later the happy optimism of old 80s favourites held sway as I skipped around Blackheath and under the big skies of Greenwich Park to playlists composed of Duran Duran and Go West.

The nearest I've come to contemplative music subsequently was probably a short while after that, when I was pregnant again and my run was reduced to the slow glide of a stately galleon. I would advance with languorous majesty and feel Betty kick and swim inside me in response to Kate Bush -- though Aerial made me cry I played it obsessively, repeatedly.

Then I was running again, and running for the reasons detailed here over the last months. To urge me on further and faster I sought the sounds of The Chemical Brothers, Justice and Fischerspooner (Just Let Go was my mantra for many weeks as I sought to overcome heart-pounding stress and upset.)

Lately though, I've been too tired and too busy to look for quality. Frankly, given the distances I'm travelling I'm happy with a bargain bucket of 12-inch Ibiza remixes and some extra banging bits. I'm guiltily aware of the damage to my soul. In terms of self-improvement this stuff is up there with Puff the Magic Dragon. Or not, actually, because the latter at least preaches a message of understanding and inclusion, while the main theme in my playlists now appears to be how quickly and successfully one can get laid.

It can't go on. I ran those 13 miles thanks to the mindless urgings of my current playlist and felt good at the end of them. Today it helped me to complete my interval training with bells on -- beating time targets for every one of the 5 miles I belted through on the treadmill in the gym, driving my tired legs to the, ahem, phat beats. But the videos playing on the line of televisions above me there further emphasised the moral quality of the tunes I'm now sickeningly hooked on: booby ladies in shorts and gangsta thugs in gold chains somehow do not making a fitting soundtrack to my noble marathon challenge.

That said, this last phase has been liberating. It's been kind of nice not to have something else to worry about. I find that actually I don't care about being cool, I have no clue who's been listed for the Mercury Prize and I don't need to be able to say I liked x, y or z years ago.

As some fella called Dizzee's been telling me: some people think I'm bonkers, but I just think I'm free.

Sunday, 8 January 2012

It is the end of the holidays and she has just returned from a week with her father. Since spending Christmas week with me, she has been in Ireland, kicking up her heels and over the traces; all routine gone in exchange for a round of cheers and songs and jokes and music and up all hours and smoky rooms and go on just another one and well now Gracie D, I'd say you've grown, from endless rounds of relatives.

She has come back taller, happy in herself and relaxed. She is also paler and shattered, wearily elegant: wearing dark circles under her eyes and purple varnish on her fingernails.

It's been three weeks of presents, parties and time away from school. This sense of unreality is hard for her to shake off -- not least because an element of it is always present, for her, even on her most grounded and formulaic school-and-home-for-tea days. My first mention of piano practice was met with a shriek -- head tilted back, eyes screwed shut -- and a "NO!" and fists hammering on the chair. Later on a request that homework be finished this weekend was more calmly received but still the eyes rolled and nostrils flared; there was a pretty stamp of her foot. I breathe in and out and say calm things inside my head. It's a careful, slow process, this reeling her in and tethering her back down, and I sympathise with her reluctance.

I'm as tired as she is, and make it an early night. I encounter her in the bathroom, pacing and talking to herself. I send her to bed.

A short while later, I look into her bedroom. Then I climb the ladder up to her bed, where she lies stiffly, faking sleep beneath her eye mask (pilfered from my room, it helps her to calm her senses and close her eyes.) I can see only her nose and her mouth, the set of which tells me she is tense.

"Come on," I say gently. "It's time to get ready to go back to it now."

She winces as if I have struck her.

"But Mummy," she says, "I don't want to go back. I don't want to go back to school and all the arguments and getting people annoyed."

"You don't have to go back to that," I say. "They're getting better at understanding you and I'm going to make sure that they keep getting better."

"But -- " she bites her lip. "What about X?" She names her latest persecutor.

"Don't worry about X," I say. "The teachers know she's playing up and they're watching her. Now, we're going to have a lovely weekend. We'll have lots of cuddles and kisses and rest and relaxing. We'll have good food and good sleep -- and if you sleep you'll be much better at keeping your temper and being patient and able to concentrate."

Grace exhales a long breath, slowly.

"Ok. But will you sing me a song, Mummy? Please?"

So I sing her a song, the same song that I have shushed her to sleep with for years. I lean over and put one arm around her and cradle her, while I murmur the words of the lullaby across her skin: along her forehead and into her hairline; into the pale gleam of her ear, down along her petal-smooth cheek to her jawline and along to her soft mouth, which I kiss as I sing: "Go to sleep, my baby, Close your pretty eyes, Angels are above you, Peeping at you, darling, from the skies." I stroke her hair and trace the length of her nose. "Great big moon is shining, Stars begin to peep, Time for little Gracie to go to sleep, Time for Gracie to go to sleep."

Her mouth curves in a faint smile. Her body has relaxed.

"Goodnight Grace," I say.

"Goodnight Mummy," she answers. "I love you."

The next evening, at around the same time, I check on Grace. She is still awake and asks me if I will sing to her again. She shuffles over to the edge of her bed so that I can put my arms around her again. Before I start to sing, she angles her head up to where she thinks my face is -- she is again wearing her eye mask and the action renders her entirely fragile and vulnerable -- to tell me something.

She says: "I've decided I'm really looking forward to the start of school, Mummy. There will be loads of interesting things to do before we get stuck into the boring old schoolwork and I'm thinking, hey, it will be good!"

The forced enthusiasm and bravery in her voice skewer me. I sing to her and I'm glad that she can't see my face. I sing to her with my voice cracking and my eyes filling up with tears. I think how courageous she is and how endlessly optimistic. I think of the baby she was when I whispered her to sleep with this song. I think of the toddler and the little, little girl she was. I think of Betty in her room across the landing, pink and flushed, cocooned in sleep and smelling of bubble bath, who also now asks me to sing her the same song. I think of the gulf between my two girls and fear for the differences in the lives they will lead and I tilt my head back as I sing so that the tears do not spill.

When I am finished Grace murmurs sleepily: "Just one more time please Mummy."

Wednesday, 4 January 2012

Dealing with the bureaucracy and paperwork associated with my daughter's diagnosis feels like running uphill.

The last two weeks have been a welcome break but the start of term in four days marks the next laborious leg of the journey.

I have meetings with the staff at Grace's school, with her special advisory teachers and with her counsellor, to continue the process of checking, assessing and cajoling as I try to secure the educational and emotional support that my daughter needs.

The short-term goal is simply to ease her days, make her feel better about herself and equip her with the skills to socialise, make friends, and understand those elements of the national curriculum -- maths, reading comprehension -- that elude her. Longer-term the aim is to obtain a so-called 'statement of educational needs': a nod from the local council that will free up extra funding and assign her one-to-one help and a place at the best secondary school in the area. We have to apply for a secondary school place in October. The process of getting a statement takes approximately 6 months in total. Time is ticking and I cannot afford to ease up.

I feel entirely alone in this endeavour. The local authority does not want to 'statement' my daughter -- it costs money. The staff at her school would like to get help, but their priority is the overall performance of the school. The various health specialists are sympathetic and want to assist, but my child is just one of many demands on their too-scarce time. I must scurry around and around them collating information while politely prodding and nodding.

Often the hill feels very steep. Factor in the constant knock-backs, random screw-ups and semi-malevolent obfuscation by local authority officials and it can feel like running up a very steep hill in lashing rain and gale-force winds.

For the last few days of my holiday the thought of what awaits me has been preying on my mind, making me anxious and irritable. Finally, this morning, I decided to do some preparation.

So I went running. Up a very steep hill. In the wind and rain and isolation of a dark grey morning under lowering skies. I am staying at my parents' house just outside Sheffield, on the edges of the Peak District and I selected the worst part of an occasional circuit I run when I'm here: a winding climb that has defeated me on many occasions in the past.

Twenty times I ran up that hill. To begin with I ran fast, full of tension and anger. Then I ran more steadily, grimly repetitive. Then I began to weave and stagger a little bit, and shout aloud my frustration. A few sheep looked up. The wind continued to blow hard against me. Several petrified trees dotted along the brow of the ascent struck attitudes of cowed wintry defeat. I huffed and puffed downhill between each attempt, counting in my head the remaining efforts as I reached the bottom, braced and once again flung myself back up the way I'd come. By the end I was almost hysterical, giggling inside my laced-tight hood at the sight I must have presented and listening to the rasp of my sleeves against my sides as I tried to power myself along using my arms as pistons.

After forty-five minutes I had achieved my goal and taken the first steps towards being mentally and physically stronger for the task that awaits me when I take Grace back to school on Monday morning. I had also officially started my training for the London Marathon on April 22, which I am running on behalf of my daughter and the National Autistic Society.

And I also remembered that this road is a long one and there will always be new hills in front of me. The trick is to use them to make me stronger. And not to think about them too much. Sometimes you just have to keep putting one foot in front of the other.

About Me

Mother, marathoner, campaigner: I started this blog with my elder daughter when she was diagnosed with Asperger's Syndrome and both of us were struggling to find support. I wanted to give Grace a voice and show the courage and humour with which she overcame challenges. I also wanted to raise awareness about autism, and to that same end, started long-distance running in support of two autism charities.
I also campaign for diversity and inclusivity as leader of the Women's Equality Party, which is a new non-partisan force in British politics uniting people of diverse ages, backgrounds, ethnicities, beliefs and experiences in the shared determination to see women enjoy the same rights and opportunities as men so that all can flourish.